The Independent Living Program movement was created by the disabled community. It has established a broad coalition of diverse disabilities functioning to provide services on a broader scale than has been traditionally offered by the rehabilitation community. The effectiveness and the strength of the movement lies in consumer control. The able-bodied professional can provide expertise, balance and a vital link with established rehabilitation programs. The integrity of the independent living program movement can only be maintained and developed if these basic concepts are respected.
The disabled movement which emerged in the early 1970s had its origins in the civil rights movements, the free speech movements, and college activism in the mid- and late 1960s. This social ferment provided a fertile breeding ground for the development of self determination in the disabled minority. In reflecting on their own experiences with traditional rehabilitation service delivery models, disabled activists concluded that they were not sufficiently visible or involved in the rehabilitation process. There existed at that time the medical rehabilitation model and the vocational rehabilitation model. It was evident that no system was present to bridge the gap between the two.
The disabled had clearly experienced multitudinous barriers to psychosocial integration into the able-bodied community. They had experienced the architectural barriers, the educational barriers, and the attitudinal barriers which had been given lip service only at that point. More significantly, however, there was the almost total absence of services designed to allow one to integrate into the community.
The basic premise of the movement is that the disabled should be integrated as fully as possible into their communities, and that the needs of the disabled can be met most effectively by comprehensive programs which provide a variety of services which do not necessarily include medical or vocational rehabilitation. An innovative feature of the movement is the premise that independent living for the severely disabled is not only feasible, but is their basic right even in the absence of vocational goals. The independent living movement established the concept of a coalition of persons with disabilities working toward a unifying goal of permitting an individual, regardless of impairment, to participate to the maximum extent possible in normal activities of everyday life.
The independent living movement was created and nurtured by the disabled community, and the successful programs are governed and directed from within this community. There have been several attempts to establish independent living programs under the aegis and guidance of medical rehabilitation institutions, state vocational rehabilitation programs, and single disability volunteer agencies. The majority of these programs have not achieved the success of consumer based organizations.
Traditional rehabilitation programs are directed by administrative and governing boards that are primarily concerned with a positive public image, a need for service development and cost effectiveness. These goals are frequently barriers to the aggressive advocacy necessary to an independent living program (ILP). Few institutions would provide a visible advocacy image in the face of potential adverse publicity.
The development of the ILP requires the identification of service deficiencies. The basic premise is the expansion of existing services to meet the needs of the individual. Traditional rehabilitation models are primarily concerned with the development of new services. The ILP movement has demonstrated a more effective expenditure of dollars in securing services form existing community agencies. A realistic fear of the ILP movement is the open attempt at assimilating the programs in an effort to gain increased funding for the institution.
The disabled community must have a primary role in the disposition of monies created by new legislation or the basic premise of self determination as a primary motivating factor will be eliminated. This would presage the demise of the ILP movement. The able-bodied professional can provide expertise to the program, but cannot provide the essential motivation or role modeling necessary to initiate progress toward independent living.
In the past, professionals have had a limited view of the potentials of the severely disabled, and we have unfortunately defined limits for various disability categories. For example, many textbooks are available that set limits for spinal cord injured patients depending upon their levels of injury. However, we have all many more exceptions to each of these limitations. How many more exceptions would there be if we did not daily define such limitations? In fact, as professionals, we need to help our patients redefine their expectations upward.
The able-bodied professional working with an ILP needs to believe in the philosophy of self-determination and to promote the basic dignity of worth of each individual. Services need to be developed that will allow for upward mobility and access to the community at large. Traditional rehabilitation models have defined programs around dependency rather than independence and the direction for change must occur with the aid of the rehabilitation professional. It is essential that a major thrust be directed toward balancing the opportunities for the able bodied and the disabled as the latter emerges into the status of the professional. It is unfortunate that within the field of rehabilitation many professionals have a distorted view of disability by never having worked with or for people who present successful disabled role models.
We must not confuse the concept of transitional living with the ILP. The development of basic living skills in a transitional facility requires professional development. The acquisition of independent living skills, however, requires the development of community resources, a variety of potential living situations, and the facilitation of adaptive coping and confrontation strategies. These issues can best be addressed by skilled peer professionals unhampered by institutional pressures.
The able-bodied professional must participate in promoting the expansion of services to the disabled. Changes in local services, such as the disastrous limitations of attendant care responsibilities in California, has significantly altered the ability of the disabled to purchase services with existing dollars. Yet no professional organization lobbied the legislature or the governor; only the disabled were heard from. To develop a true collaborative relationship, we, as able-bodied professionals, must speak out publicly for those we serve.
In summary, the able-bodied professionals must provide leadership in their areas of expertise without dominance, they must provide services, they must be active advocates, they must share their unique skills, and they must provide training. They must assure that there are the same opportunities to develop positive role models as are available to the able-bodied population. For successful involvement in the development of an independent living program, the able-bodied professional must allow the direction of the ILP to occur from within the disabled community, reflecting the unique needs of that community and its members.
Source: Arch Phys Med Rehabil Vol 60, October 1979, Sheldon Berrol.